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Dr. Faustman on Science Friday today

Discussion in 'Parents of Children with Type 1' started by Snowflake, Jun 12, 2015.

  1. Snowflake

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  2. Andrelaplume

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    ...not sure why folks are not more exceited over this research...I know it's easy to become ambivalent but I have been following this for a few years and have seen nothing that shows it will not work....keep the faith!
     
  3. Lisa - Aidan's mom

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    I too am hopeful for Dr. Faustman's research!
    I was disappointed when we attended our local chapter's JDRF annual meeting in June and Dr. Kowalski said he was "skeptical" about it when the question was raised by a member in the audience (although he did say he hopes his doubts are incorrect).
     
  4. Sarah Maddie's Mom

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    JDRF has a long and largely ugly history of dismissing and demonizing Faustman and her work. It goes way back to the beginning.
     
  5. jenm999

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  6. Christopher

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    To answer your question, here are a few reasons people may not be that excited:

    "It's going to take a very long time. The current plan is to complete data collection in 2019, and finish the study in 2022. That means it is reasonable to expect publication in the 2022-2023 time frame. I specifically asked if they were going to publish interim results (for example: after one or two years), and the answer was no. But they certainly do understand that 2022 is a long time to wait.

    I'm also worried about the BCG dose they are using. It is only very slightly different than the dose on their previous phase-I trial. The phase-I trial (which saw only tiny results, and maybe not even that) dosed twice, a month apart. This trial does the exact same, then waits a year, and doses once more, repeating the one dose per year for a total of four years. They hope to see improvements after each yearly dose. Some recent work in using BCG to treat multiple sclerosis (another autoimmune disease) gives them optimism about this dose. But in the phase-I trial, the results after 2 doses were so tiny that even if they saw 5x that size result, it will be no where near a cure. Still far to small. To repeat: if the two doses a month apart did little/nothing the first time, why should they do more now? And the additional one dose per year, seems like a small difference for large hopes.

    There is another worry as well, which comes directly from Dr. Faustman's phase-I trial. That trial (as first described in their clinical trials record) was quite different than the actual trial (as published). The paperwork included 25 people and a standard placebo group. However, the completed trial only involved dosing 3 people, and several different comparison groups (used for different end-point measurements). Hopefully we will not see that kind of downsizing or design change in this clinical trial."
     
    Last edited: Jul 6, 2015
  7. sszyszkiewicz

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    Well there is literally nothing we can do but wait,

    I am always thankful there are people smarter than me working the problem.

    I wonder, for those countries that still use bcg to fight tuberculosis, what the diabetes incidence rate is?
     
  8. swellman

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    Almost certainly the same providing they have the same metrics. IMO.

    I am going to chime in and say that I am completely underwhelmed with the results coming from the Faustman studies. My cynical side tells me it's a career in promise and the length of the process doesn't abate that. I hope I'm wrong but I think it's money going to careers and not an end result.
     
    Last edited: Jul 6, 2015
  9. rgcainmd

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  10. Deal

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    When using Joshua's words please quote him. He provides great value to this community, at least give him credit.
     
  11. jenm999

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    Yes, the blog is outstanding. Analysis from a smart layperson is so helpful.
     
  12. Christopher

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    Really?? Seriously?? You felt that telling me how to post was that important you took the time to try and tell me what punctuation I should use? Wow.

    Look, this isn’t a peer reviewed medical journal. This is a public Internet forum and if you think I care what you think about my posts, you are sadly mistaken. And I would venture to guess that Joshua doesn’t care one bit if I give him “credit” or not. He is just a person like the rest of us. He does provide helpful information, but so do a ton of other people on this site. If you want to kiss his butt, great. If you want to police the forum and make sure people are given their “credit” go for it. Hey, if you are so concerned about credit, I will give you credit for something, and that is for being obnoxious. Is that better?
     
    Last edited: Jul 9, 2015
  13. swellman

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    That escalated quickly.
     
  14. joshualevy

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    Your guess is wrong. I do care that you give me credit for my work. Every blog posting that I make, takes over 10 hours of total work: research, writing, and review. I don't get paid a dime for any of it, but giving me credit where credit is due is the very least you can do for my work.

    I love it when people quote my work; it shows they care. But I don't appreciate it at all when people use my work without even saying it is mine! That is being a leech. The very least you can do is to spend 10 seconds typing "Joshua Levy had this opinion:" and cutting-n-pasting the URL to my blog (if you are including many sentences of my work).

    He was not complaining about punctuation. He was complaining about attribution, which is different and important.

    If you look at your posting #6 in this thread: It is 1 line quoted from someone else, 1 line you wrote, and 20 lines that I wrote, that you copied without putting my name (or my URL) anywhere in the post. It's scummy. There is no mention that it is my work; you make it look like your thoughts. No one looking at your post would have any reason to think I had written it.

    Just so everyone is clear for the future:
    1. I like it when people quote my work.
    2. Please include my name when you do.
    3. If you include a long quote, please include a URL to my blog.

    Joshua Levy
     
  15. Christopher

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    Calling me names like leech and scummy shows a lot about you. To get this worked up over something so trival as whether or not I gave you "credit" for what you said makes you appear self-centered and egotistical, in my opinion. If you are really that self centered that anytime someone talks about something you wrote they need to proclaim it is from you and include a URL to your blog, then that is your issue. I used to assume you were a decent guy and I actually do think you usually provide good information for people on this site about research. But this side of you is something that is surprising. And just to clear up one more thing, I used quote marks to indicate that I was quoting someone else and was not implying those were my words. If people can't understand that, it's not really my concern. And you don't need to worry about me not giving you the oh so important "credit" for your words, I won't ever be using them again. So everyone should be happy.
    I'm done with this thread.
     
    Last edited: Jul 10, 2015
  16. swellman

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    I approve this message.

    This message speaks for itself.
     
  17. DavidN

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    Sometimes one of the most difficult things in life, for kids and adults, is to swallow a little pride, admit you were wrong, and apologize.
     
  18. Theo's dad Joe

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    I know that my wife grew up in a country where she received several serial bcgs. They also have less than 1/4 the (diagnosed) T1D rate as the U.S., though diet and genetics may play a role. She herself had borderline gestational diabetes as did her mom who was also vaccinated. She also said that the state (socialist) scientists may have been hesitant to stop using bcg because they were getting lower childhood (non TB) mortality rates in kids who received the vaccinations.

    https://www.diabetes.org.uk/About_u...by-incidence-of-Type-1-diabetes-ages-0-to-14/
     

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